What Could Obsessive-Compulsive Disorder (OCD) Look Like?

Common signs include the following:

*Individuals may have obsessions, compulsions, or both.

• Obsessions: recurrent and persistent thoughts, worries, images, or urges that are invasive and unwelcome; these thoughts cause significant distress and are often hard to ignore.
  • Examples: worries about germs or that touching certain things will give them germs; something bad will happen to a parent or others; things need to be “just right” or complete (e.g., items need to be in the perfect spot, washing hands over and over until it feels complete); aggressive thoughts (e.g., violent thoughts or images, concern that they may cause harm to another person). 

• Compulsions: time-consuming, repetitive behaviors or actions that an individual does to decrease worry, stress, or fear; often compulsions are in response to the obsessions.
  • Examples: repetitive cleaning (to manage the worry about germs and getting sick), checking (e.g., checking to make sure the stove is off multiple times before you leave the house), counting (e.g., turning the lights on and off exactly five times), and collecting (e.g., saving “useless” items such as old magazines or broken items out of fear they might be useful in the future).

There is some overlap between the characteristics of ASD and OCD. How do you know when behaviors are characteristic of ASD and when behaviors are suggestive of OCD?

• OCD may sometimes be confused with the focused interests and repetitive behaviors that are often seen in autistic individuals. The key differential feature is that OCD generally causes distress and fear and the compulsions (or repetitive actions) are typically in response to the fear. Focused interests and repetitive behaviors that are related to ASD are typically soothing and/or enjoyable.

Example of repetitive behaviors NOT associated with OCD: Every morning, an 8-year-old girl lines up her stuffed animals on her bed because it makes her happy. After she lines up her animals, she is ready to go to school. When she gets home from school, she likes to flick the light on and off in her room because she likes the sound and enjoys repeated movements and flashing lights.

Example of OCD: In the morning, a 13-year-old girl has unwanted thoughts that her father will be hurt. She lines up items one by one in a specific color order on her desk to be exactly symmetrical. This takes longer than 20 minutes. If she misses an item, she has to start all over. If she does not do this in the “right” way she believes something bad will happen to her father. After she lines up the items, she goes to school but has difficulty ignoring thoughts about her father being hurt while she is at school.

How To Help Your Child with OCD At Home

Many parents engage in rituals to help lessen their child’s worry or distress. However, engaging in these rituals often unintentionally strengthens and reinforces their symptoms of OCD rather than helping to decrease their symptoms. Exposure and Response Prevention (ERP) is an effective treatment for children with OCD. The goal of ERP is to help your child learn to face their fears and worries without engaging in compulsions. ERP teaches your child that their obsessive thoughts (e.g., something bad will happen) will not come true, even if they do not engage in their compulsions (e.g., turning the lights on and off five times). An example of ERP to help with the example described above may include intentionally messing up the order of items and not allowing the person to correct the order.

It is important to remember that everyone experiences fear or worry as a part of life. The goal is not to get rid of worry or fear completely, but to help your child manage their feelings. It can be helpful to share with your child that we all worry sometimes and they are not alone in their feelings. Because too much worry/fear gets in the way of daily life and the things that your child wants to do (e.g., attend birthday parties, ask for help at school), you will need to find ways to keep these feelings in check so that they do not interfere with everyday life. Cognitive Behavior Therapy (CBT) is an effective treatment for anxiety and helps children understand the connection between thoughts, feelings, and behaviors. Below are ideas for self-care as well as how to help your child recognize their physical signs of anxiety, their negative thoughts, and then develop ways to help decrease their symptoms. There are also ideas for how to change their thinking patterns when faced with situations that cause worry.

Self-Care

• Below is a list of general self-care strategies that may be helpful for your child to stay regulated and may help in reducing their level of worry.
  • Regular exercise
  • Good sleep routine
  • Eating a well-balanced diet
  • Engaging in a range of hobbies or activities

Managing Physical Symptoms

• A good first step is helping your child understand that when they feel worried or afraid, they may feel it in their bodies. It will be helpful for your child to make the connection between their worries (thoughts) and the changes in their body.

• People experience worry in their bodies in different ways. It may be helpful to work with your child to identify “where in their body” they experience their worry (e.g., butterflies in their stomach, sweaty palms, tingling in their arms and legs).

• The goal is for your child to notice when they begin to feel these physical signs so they can eventually manage them.

• Deep breathing (slowly breathing in and out) and progressive muscle relaxation (systematically tensing and relaxing muscles throughout the body) can be helpful to decrease physical signs of worry.

• It may also be useful to identify other activities your child can do when feeling worried. For example, taking a break, moving their body, or engaging in hobbies, music, or art can useful tools to calm down.

• It will be important to practice these skills and activities when your child is in a calm state before trying them when they are in a state of worry.

Identifying Our Patterns of Negative Thinking

• Negative thoughts may often lead to more worry.

• The goal is for your child to identify these negative thoughts and substitute their thinking with facts or positive thoughts. The below recommendations are typically used in CBT for youth; youth with ASD may or may not find these specific approaches helpful. 

• It may be helpful to ask your child the following:
  • How likely is it that my fear/thought will come true?
  • What is the worst thing that could happen?
  • Can I control what happens in this situation?

• It may be helpful for your child to manage fears with facts:
  • For example, if your child is afraid of getting stung by a bee so they don’t want to go to the park, they could use facts such as “I’ve been to the park many times and I’ve never been stung so I probably won’t get stung this time!”, “It is winter, bees don’t come out in the winter”, or “Even if I do get stung by a bee, it will hurt a little, but I’m not allergic so I’ll be okay!”.

• Positive self-talk may be helpful:
  • Instead of “I can’t do this” phrases like “I will do my best!” or “I can give this a try!” are helpful.
  • Instead of “This is really scary!” phrases such as “I can try new things!” or “This is a false alarm” are useful.  For the bee example listed above, you might help your child say: “I want to go to the park because it is fun; I don’t want my worry to get in my way” or “I can be brave and go to the park.” 

Facing Fears a Little at a Time (Graded Exposure)

• The goal of facing a gear a little at a time is to gradually and repetitively face the feared situation or thing. Ultimately the goal is to decrease the worry and help your child learn to manage their feelings. Exposure is important because avoidance of anxiety-provoking situations or things may often lead to worsening or longer-lasting worry.

• It is important to remember that the goal is not necessarily to eliminate worry altogether but to decrease the impact of the worry and increase your child’s ability to handle the situation.

•  Facing fears of a toilet flushing phobia (described above) may include the suggested steps.
  • Look at pictures of toilets.
  • Watch videos of toilets flushing without any sound or low sound.
  • Look at toilets in-person without flushing from a distance. Slowly decrease the distance between your child and the toilet with the eventual goal of touching the toilet without flushing.
  • Softly listen to the toilet flushing sound for a short period of time (e.g., 10 seconds). Increase the amount of time your child listens at a soft volume.
  • Slowly increase the volume of the flushing.
  • Stand outside the bathroom and listen to a toilet flush.
  • Decrease the distance between your child and the toilet as it flushes.
  • Your child flushes the toilet.

Considerations for Minimally Verbal Youth

• Managing physical symptoms will be particularly important. In addition to deep breathing (mentioned above), squeezing small bean bags or other objects and chair yoga (e.g., yoga that you can do in your chair or standing next to your chair) may be helpful.

• Encouraging phrases from caregivers or providers such as “I can do it” or “I did it” may be helpful. The goal is for your child to then repeat the phrase themselves.

• Facing fears will be similar for all youth.

Other At-Home Activities to Manage Worry

• Label the worry
  • For some children, labeling their worry can be helpful because it is hard to express their emotions or fears. Labeling the worry can also help when developing useful ways of coping.

• Coping Cards or Coping “Toolbox”
  • These activities are most helpful when they are completed ahead of time so your child can use them in the moment when they are experiencing worry or stress.
  • Making “coping cards” can be a fun and useful activity to develop ways your child can calm down when feeling worried or upset. Your child can draw or write down activities on notecards. Activities such as coloring, going for a walk outside, reading a book, listening to music, or calling a friend may be helpful.
  • Other kids like to have a “toolbox” with ways of coping. For example, your child can decorate a shoebox and put items inside such as playdoh, crayons, a squishy ball, or other items that may be useful to use when feeling worried and trying to calm down.

• Start Small and Use Rewards
  • Facing worries is hard work! It can be very helpful to use rewards to increase motivation. It is important to begin with small goals so that your child meets their goal and feels successful from the start. Talk with your child about what they want to earn when they meet their goal. Earning tokens, stickers, or marbles that they can then turn in for a special treat, or for more time doing a favorite activity can be helpful. For older children or adolescents, earning extra screen time, a trip to get ice cream, a movie night, or even money may be motivating.

University of Colorado Anschutz Campus Programs

Facing Your Fears

• This is a 14-week intervention group program for children with ASD who need help managing their symptoms of anxiety. The program is based on Cognitive Behavior Therapy (CBT) principles and includes a parenting component. 

Facing your Fears IDD Group

• This is currently a research study evaluating an adapted Facing Your Fears intervention group program for children with ASD and intellectual disability who need help managing their symptoms of anxiety. The program is based in Cognitive Behavior Therapy (CBT) principles and also includes a parenting component.

Children’s Hospital Colorado Pediatric Mental Health Institute (PMHI) 

• The PMHI provides mental health services to children, adolescents, and families for a range of conditions. Providers at PMHI deliver evidence-based, family-focused services and often include interdisciplinary teams.